Navigating the Health Services is never easy and finding out what help is available and then dealing with whoever is managing that department can be stressful. We feel vulnerable and at their mercy as we know that the amount of help we will ultimately receive often depends largely on an assessment made by a single person during a single visit. More than likely that person will never have heard of CRPS. For someone with CRPS this is a huge concern.

10 Important Points

CRPS is a serious neuropathic disease comprising many symptoms, pain being the primary one. CRPS pain is unlike any other, it is intense and severe, most people can't possibly know what this type of pain is like.

This is a progressive disease and that means it will not get better.

My pain is often delayed and I may be fine one day but unable to move the next.

Even though I helped cook a meal one day does not mean I can do the same in 3 days.

I rarely do shopping on my mobility scooter as the vibrations of the journey are enough to bring on a massive pain flare. For the same reason traveling long distances in a car will also stir up my pain.

Please do not suggest I try something that has benefited others with pain without first reading about CRPS and my story. You will find there information about most of the things I have been through and done to help myself since it all began in 2007. I appreciate some people will have the best of intentions but without knowing all the facts your suggestions can often become another source of stress.

I have read widely about CRPS and pain, had many discussions with my pain management specialists, and listened to their advice. I have researched and done everything possible that can help. It has not been easy to accept this disease that has taken over my life and controls my body. Please respect that I probably know more about pain and my disease than you do.

I do not know from one day to the next how much pain I am going to experience or when a pain flare will strike. This is one of the most difficult and frustrating components of my CRPS. My level of pain will determine what activities I can manage each day; planning ahead is always conditional. I know from experience that if I do too much I will pay the price of increased pain levels in the future, either that night or sometime in the next few days or weeks. Pacing my activities and resting is an important way of controlling my pain levels and in order to do this I need help, help that is flexible.

Respect that I know my limitations & give me credit for keeping on doing all the things I can do.

Please read now the description below about neuropathic pain and how my pain differs from other types of chronic pain.

What is Neuropathic Pain and Why is it Different?

The main types of pain are nociceptive pain and neuropathic pain.

Nociceptive is pain following a cut or a broken bone for example. Tissue damage or injury initiates signals that are transferred through peripheral nerves to the brain via the spinal cord and we become aware that something is hurting.

Neuropathic pain is pain caused by damage or disease that affects the nervous system. Sometimes there is no obvious source of pain, and this pain can occur spontaneously. Neuropathic pain is initiated or caused by a primary lesion or dysfunction in the peripheral or central nervous system. One example is the phantom limb pain patients feel after amputation. The pain may be spontaneous, stimulus-evoked, or a combination of both. Its characteristics are often different from those of nociceptive pain experienced after an injury.

In neuropathic pain the central neurons are sensitised, so they fire spontaneously, or abnormally. If this sensitisation persists the pain becomes chronic and is often difficult to treat.Neuropathic pain is often continuous in nature (as opposed to movement-induced pain), and can have burning and shooting qualities. There are also associated symptoms such as numbness and dysaesthesia (an abnormal unpleasant sensation felt when touched, caused by damage to peripheral nerves)There are considerable overlaps in the pain descriptors between nociceptive and neuropathic pain. Some patients may have nociceptive and neuropathic pain.

Why Amputation is not an option

In the first few years I consulted surgeons about doing this as a solution and they flatly refused. They explained that it was highly unlikely to stop my pain and would more than likely make my pain worse.I had trouble imagining what 'worse' could be like because I really doubted it could get much worse, the thought of it getting worse could make living close to impossible. My CRPS pain is not coming from the anything physically wrong in the foot although the original pain was caused by something that was wrong (a growth on a nerve), that growth was removed and the pain is now being maintained by a disease involving a malfunction of the peripheral and central nervous systems, not anything wrong in the foot.